Taking every precious day as it comes

developmental delay

I don’t know why I still subscribe to them. Those weekly emails from the parenting websites listing the milestones my children ‘should’ be reaching at three weeks, three months, three years. It’s weaning time! … How to get your toddler to sleep … Starting school … and, this week, 50 reasons why it’s fun to be a [mainstream] parent.

I know they mean well. If you’re struggling with sleepless nights or a tantruming toddler it’s good to be reminded of the positives, right? But what if none of those things that make mainstream parenting fun apply? What if ‘discovering how lovely the dawn chorus can be’ just doesn’t cut it? What if you’re never going to hear him ‘say I love you Mummy’? Is parenting a SEND child no fun?

Yes, it can be exhausting, challenging, nervewracking, heartbreaking. But I firmly believe that deeper troughs make for higher peaks. SEND parents not only learn to celebrate the tiniest inchstones for all they are worth, but to see the funny side of things that frankly aren’t funny at all! I’m sure these will be different for every SEND family but, on Benjamin’s third birthday, I’ve put together my own list of reasons it’s fun, wonderful and inspiring to be his mum.

He gives the best smiles

He gives the best hugs

Running my fingers through his curls

Looking into his big brown eyes

Tickling the baby-soft soles of his feet

Savouring the simple things with him – the light coming in the window, leaves against a blue sky

Seeing the love his siblings have for him – and how he reciprocates it

Seeing how gentle, loving and patient his Daddy is with him

Seeing his heart rate go on up the sats monitor when he hears Mummy or Daddy’s voice

His smile when you give him a taste of ice cream

His look of disgust when you give him pureed chicken!

Learning a whole new set of skills (nursing, negotiating, engineering, accounting, …). If only I could put them on my CV…

The sense of satisfaction when you hoover a big plug of phlegm out of his throat

The way he looks around in delight when you put his glasses on

How cute he looks in his glasses

An excuse to hang a disco ball in your lounge and have fairy lights up all year

An excuse to play with bubbles every day

Getting to watch Waybuloo on repeat

Shopping – who knew how many gorgeous bibs and onesies there are out there nowadays?

Choosing cute teeny tiny glasses

Choosing snuggly jumpers and snugglier socks

Rediscovering the joy of Christmas – baubles and fairy lights really are all you need

Seeing how he relaxes in the bath

The sense of satisfaction when you manage to capture that smile on camera

Learning his unique language

Seeing him turn his head to look at me when I speak

Seeing him smile when I walk into a room

The special kisses that he saves just for mummy

The special nappies that he saves just for Daddy!

Morning snuggles with five in the bed (we really need a bigger bed)

That feeling that you could watch him sleep forever

Making amazing new friends with amazing wee heroes for children

Meeting a community of other SWAN parents who just get it

Everybody in the town wanting to stop and hear how he is

People passing in the street saying ‘You’ve got your hands full!’ and thinking ‘Yeah, and I wouldn’t have it any other way.’

All this in just three years; I can’t wait to see what you bring us in the future. Happy Birthday my gorgeous boy, I am truly grateful to be your mum.

Like this:

What should I say, Benjamin, that I didn’t say this time last year? What can I report? How have you changed?

I remember the day of your birth so clearly: the turmoil, the fear, the sheer, sheer joy of holding you close and knowing that we had made the right choice. I remember your first birthday: the exhilaration that you had got this far, the promise that you held.

But what should I say, another year on?

So much should happen in the second year of a child’s life. They should start walking. They should start talking. They should learn to feed themselves, to play, even to tantrum. They should… Should.

As the milestones turn into inchstones, and even the inchstones fail to appear, what should I say?

Well…

I should say that you have gained weight, gained strength, gained energy.

I should say that you can see, hear, taste and feel – much more than the doctors say you can.

That you can hold your head up, that you can roll from your back on to your side.

That you have favourite toys, favourite foods, and favourite people.

That you can show recognition, surprise, disgruntlement, and love.

That you have brought us new friends and new opportunities.

That you have taught us patience, perseverance, understanding and gentleness.

That you give my life focus and meaning.

That you are so loving and so very much loved.

That you don’t care about should. That you have come so far this year. That we celebrate you today and every day. Happy birthday, my precious boy.

Like this:

You know that wonderful feeling you get watching a sleeping child? That sense of peace, and of promise. That perfect little nose. Those long dark lashes and wayward curly hair. That soft, soft cheek under your lips as you kiss him ever-so-gently. The little sucking motions he makes as he dreams. You wonder what he’s dreaming about.

And then you realise that you, too, are dreaming. Dreaming that when he wakes up, he will be the normal little boy that he looks like at this moment. That he will catch your eye, roll over, hold his arms out for a cuddle. That he will slide out of bed and toddle down the hallway. That he will smear his breakfast all over the kitchen. That he will protest, loudly, about getting washed and dressed. That he will charge into nursery to greet his friends at full pelt without a backward glance. That he will call you “Mummy.”

**

If I had my time again, I might study psychology. It fascinates me, as one of our last frontiers of discovery. We can extrapolate what happened at the farthest reaches of the universe, a billion light years ago, but we cannot tell what is going on in someone else’s brain. Two people can look at the same scene, but never know what the other is seeing.

In particular, I wonder about Benjamin’s brain. We know its structure, thanks to the MRI scanner, perhaps more intimately than that of most brains. We know the pattern of his brainwaves under an EEG. But we don’t know what he’s seeing, hearing or thinking. Does he dream at all? Does the world seem hazy and distant, or overwhelming in its Technicolor clamour? Perhaps he’s taking in everything around him, but cannot control his muscles enough to respond in any way. Perhaps he’s frustrated, trapped: that is my worst fear.

Actually, he doesn’t seem frustrated at all. Most of the time he appears relaxed, contented even. I hope that means he’s happy with whatever it is that he sees, hears, feels and thinks. But placid and unmoved as he may be, it’s hugely important that he’s given every chance to communicate, to learn ways in which he can influence his surroundings. We must make every effort to understand what he’s trying to tell us, even if he doesn’t know he’s trying. To spot the nuances in his awkward hand gestures that indicate the difference between reaching out and pushing away. To feed back to him that he can influence his surroundings.

Benjamin has a “BeActive Box” also known as a “Little Room,” which is a basically a three-sided, Perspex-roofed fish tank in which he can play. The idea is that it both blocks out disturbance from the outside world and amplifies any movement or noise that occurs inside the box, so Benjamin can get the maximum feedback possible from any movements he makes and any toys he touches. Whether or not it’s working, he certainly seems to enjoy “his box” as we call it … he usually falls asleep in there.

He’s also recently had a few sessions with an iPad: just touching the screen, exploring cause and effect, making a firework explode or a xylophone “ting.” It’s easy to read too much into it, to think he’s interested, he’s trying, he knows that cause does lead to effect. Yet, we have to assume that he is engaging, or we would never do anything but plonk him in his box to sleep… Maybe one day he will even learn to use that iPad to communicate using his gaze. I’m grateful that we live in a time where such things are, at least technologically, possible.

Far more important than technology are the many wonderful therapists and teachers who visit us to help unlock Benjamin’s brain. They’ve bombarded him with sensory toys, and me with a host of new languages: BSL, Signalong, Makaton, Canaan Barrie, TaSSeLs. Given his apparent visual impairment, I’m focusing on the tactile signing systems, at least for communicating to Benjamin. If we can be consistent enough and committed enough, he may start to associate signs with events. For him to communicate with us, to start to teach us what he is feeling under that unruly mop, we must learn to interpret his expressions, body language, and vocalisations. So far we understand smiles, grimaces, a cry for hunger and a cry for pain. An open mouth means “yes” to food or milk. A batting of the right hand means he wants to play. Extension of both arms may indicate discomfort. Eighteen months and I have learned six, maybe seven of his “words.” It’s slow, slow progress and a demoralising success rate. But we have to keep trying if we are to keep our dreams alive.